Why the heck am I posting this, you ask? Well, it occurred to me that a lot of this stuff can be difficult to articulate. Maybe someone might find it useful to copy this and say "hey, this is how I feel sometimes." I spent much of the day going back and revising, adding, editing etc. caution: long post ahead!A little context: I love my mom so much, and I know she loves me. But man did I need to say this today. I haven't sent it yet, still deciding.She sent me a text today saying her local news issued a "migraine alert" due to the falling barometric pressure. She asked if I knew that could cause migraines?.She then noted that the news said to drink lots of water, and take magnesium.I'm almost 38. I got my first migraine at 8, and was diagnosed chronic at 14. My mom has also suffered from migraines in her lifetime, but they were the more classic "long and awful, a couple of times a year" type. They stopped after menopause (almost 20 years ago).Also, just to make sense of the bit about the carry-on and about her not seeing me much, we live about 2,500 miles apart, and have since I graduated from college.Also, I am aware that some of the letter is a bit "direct" feeling. That's just how we are...So, here it is:"I know, 100%, how absolutely, purely well intentioned you are. Really, truly, I do! But when it comes to the migraine stuff, please please please stop. I don’t think you realize how fully and completely my condition runs my life. I don’t expect you to know, I don’t expect anyone who hasn’t been here to know. But the emails and texts do nothing but serve to remind me that I live a life that no one, not even those close to me, can truly wrap their minds around. [Husband] is very very very good, he's 95% there because he sees me every single day, and knows my limitations and things I have to think about and the steps and preparation I need to take before I can do...well, anything. But even he simply CAN'T fully understand because it isn't happening to his body. And that's OK...actually, that's good, because I don't want him to EVER "know", if it means he has to experience it. And I don't want you, or anyone else, to know either.My diagnosis is "Migraine without aura, Daily chronic migraine with intractable migraine, with status migrainosus" (this is taken directly from my most recent post-office visit summary). That means a migraine that never truly goes away, that redevelops (on average) daily into something requiring intervention of some sort, and sometimes involves the knock down drag out 72+ hour marathons like you used to have. I leave the house with a rather large bag of medications, water, a hat, and sunglasses. If I am actually traveling somewhere, I have AT LEAST a full carry-on bag of items related to migraine – meds, a special pillow, a humidifier, ice packs and heat packs. So please don't ever ask my why I can't just bring a carry on...there is no room for clothes or anything else. I plan EVERY excursion out the door based on the likelihood that a migraine will develop before I return home, and considering what I need to have with me in that event. I read EVERY label before I put something in my mouth. I have an entire drawer of rescue medications and other supplies in the office. I keep my mouth shut about the pain I am in or the things I can or cannot do because I don’t want to let people down, or worse, be “piffled” because it’s just a migraine.So yes, I know what a horrible trigger barometric pressure is. I know about magnesium. And feverfew. And B vitamins. And butterbur. And Co-enzyme Q-10. And water (btw…duh. EVERY chronic migraine sufferer will tell you this is just offensive). And sleep schedules. And cefaly, and TENS units, and surgery options and nerve blocks. And trigger foods, and elimination diets, and keto and gluten free and acupuncture and chiropractic and massage and biofeedback and migraine diaries and hormones and allergies and LITERALLY EVERY MEDICATION ON THE MARKET, AND EVERY MEDICATION IN DEVELOPMENT. And probably about 1,000 other things. We've tried them all. We’ve discussed moving. We've decided not to have children because of this. We’ve discussed hysterectomy. We’ve discussed removing entire chunks of muscle from the base of my skull. I get 36 injections in the face and neck every 3 months just for a little bit of relief. Most days, I take medication that can give me a stroke. I can't be too hot, or too cold, or too tired, or too stimulated. I can't have a drink after a stressful day. I can’t wear nice smelling perfume. I can’t stay up too late or sleep in too long. Sometimes just being in public with the lights and the sounds and the smells can be torture. I can't just go for a run or a bike ride...what if I overheat? What direction is the sun coming from? What is the current humidity level and pressure? How will these things affect me when I start increasing my heart rate (Hint: Not well). I have to be that person at work who asks other people to not wear perfume, or to ask what’s in the homemade treat they brought to work. I can't just...GO...and do something spontaneously because I feel like it. And then, even if I am able to control EVERYTHING around me perfectly, there is still a 50/50 chance I will have a migraine. Just because.And the thing is, this is normal to me. It's been so long that most days, I don't think about it too much. I am much more likely to notice a day where I don't have a migraine and think "hey, that's unusual", than notice a day where I do have a migraine. And emotionally, it's become the norm, and I've learned to deal with it. I asked [Husband] many years ago to not ask me how I am feeling, or "how's your head?". If it's bad I will let him know. I have bad days, days where I am angry and sad and feeling sorry for myself. But mostly I don't really know any different. Until I get an email from you or someone else about migraines, and it illustrates for me just how isolated and different I really am. And that's when the flood gates open.And I know you mean well, but every time you send me something me heart sinks. Because I am reminded that you just don’t know (how could you?) the true extent of it. Because if you did, you would know that I’ve known about the things you are pointing out to me for months, or years, or in some cases, decades. I will be reminded that you made cookies for me (which is sweet, thank you) using Splenda, which I cannot have. I will be reminded that you just don’t have to think about it every second of every day, and being reminded that this is NOT NORMAL just sucks.I love you, and I know how much you love me. I know you want to help me. I know you see these things and get excited to share the information. And I think I try my best to smile and say thank you, because I don’t want to hurt you or let you down. But it’s an emotional blow each time, and I know you don’t want that, either. And I know you would be upset if I didn’t tell you.So, thank you for all of the well-meaning emails and texts over the years. Now knock it off!" via /r/migraine http://ift.tt/2rpu6yG
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